About Me

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly,
mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.”
-- Baruch Spinoza

Friday, May 16, 2008

Does Autism Research Support Humanity or Human Deviance?

Does Autism Research Support Humanity or Human Deviance for Profit?

McMaster University is doing autism research. Autism Speaks raises a lot of money and some of that goes to our researchers based in Toronto and in Hamilton. Much of the money goes towards research to detect autism early or towards preventing or curing autism. The purpose of early detection is for early intervention. The concept of early intervention is derived from a medical model where the earlier diseases like cancer are detected, the better the chances of living. As a person recently diagnosed with early ovarian cancer, I can attest that in the case of mortality, I am thankful for early detection. However, in autism, the premise of early intervention isn’t that much different than the cancer model – children begin to undergo a rigorous process of “becoming normal,” and are taken out of regular daily life, because they are not deemed “regular.” They are viewed as sick.

So it is with skepticism and interest for me to read of the recent research done at McMaster University of eye tracking as seen in The Globe and Mail today. The idea is that at nine months of age, we might be able to detect autism because it is assumed that autistic babies do not follow changes in eye direction. The early diagnosis is to find those children at “high risk” for autism.

I didn’t know my son Adam was such a risk. A risk to whom? I have to assume he must be seen as a risk to society, even though our friends enjoy him and he is living quite well. If living well means to receive an aide to assist and a teacher who understands so an autistic person can learn, then I feel that that is where the money should be spent. I also can’t say that he would have passed or failed that eye-tracking test and it’s my guess that with the ranges of autistic people out there, the test will not be very reliable because there is not one general assumption in autism that is universal for every autistic person. Adam’s eye contact seemed okay, maybe a little inconsistent. It was his play and interests that were different – the ones that also gave him an exceptional ability to read and correct his classmate’s work because of his ability to SEE the things they cannot.

Further, “the probability of a baby developing autism,” as stated in the article, would not apply to us. While individuals may develop autistic-like behaviours, it’s not necessarily autism. I can attest that dear Adam has been autistic since birth and probably in vitro. His wide almond eyes were curious and clever from the moment he was born. His surroundings were already an assault on his senses.

So where does this leave us? All this money being spent on finding earlier interventions to make our children less autistic? All this money being spent on tests that do nothing afterwards – they do not advance inclusion or eradicate fear of human difference so that our children receive fair and equal education and opportunity. No one is really working to understand and respect how autistic people learn so that our kids can become part of the world. No, early detection is still eerily angled at eradicating human difference.

“Much or Western European history conditions us to see human differences in simplistic opposition to each other: dominant/subordinate, good/bad, up/down, superior/inferior. In a society where the good is defined in terms of profit rather than in terms of human need, there must always be some group of people who, through systematized oppression, can be made to feel surplus, to occupy the place of the dehumanized inferior. Within this society, that group is made up of Black and Third World people, working class people, [autistic and other disabled people], older people, and women.” [Brackets mine]

She notes how it is the underclass, or oppressed groups, which autistic individuals have described themselves, that are expected to bridge the gap, change, be cured, act normal, rather than society who also makes a concerted effort to understand, accommodate and accept difference:

“As a forty-nine-year-old Back lesbian feminist socialist mother of two, including one boy, and a member of an interracial couple, I usually find myself part of some group defined as other, deviant, inferior, or just plain wrong. Traditionally, in American society, it is the members of the oppressed, objectified groups who are expected to stretch out and bridge the gap between the actualities of our lives and the consciousness of our oppressor. For in order to survive, those of us for whom oppression is as American as apple pie have always had to be watchers, to become familiar with the language and manners of the oppressor, even sometimes adopting them for some illusion of protection. Whenever the need for some pretense of communication arises, those who profit from our oppression call upon us to share our knowledge with them. In other words, it is the responsibility of the oppressed to teach the oppressors their mistakes. I am responsible for educating teachers who dismiss my children’s culture in school. Black and Third World people [and autistic people] are expected to educate white people as to our humanity. Women are expected to educate men. Lesbians and gay men are expected to educate the heterosexual world. The oppressors maintain their position and evade responsibility for their own actions. There is a constant drain of energy which might be better used in redefining ourselves and devising realistic scenarios for altering the present and constructing the future.” (P.p. 114-115 Audre Lorde, Sister Outsider, from her essay Age, Race, Class and Sex: Women Redefining Difference)

I know of so many autistic individuals who fight the good fight every day -- who have to justify their existence and intelligence and disability as autistic people. Moreover, the idea of "pretending to be normal,"a title of a famous autism book, is echoed in Lorde's statement -- that the onus is on the oppressed group to change and no effort should be made on the part of the non oppressed group. That is the entire premise upon which most autism therapies are based and built.

Rather than focusing research on eradicating difference (in this case autism), it should serve to examine the way we include autistic people in participating in research and on boards of directors and on the way we use autistic strengths to educate and include autistic children in the classroom. (Must I mention AGAIN that no school board here in Ontario has an autistic person on it??) The Globe and Mail article on eye detection tests for early detection of autism does not make clear how it will better and enhance the lives of autistic people. It does not mention how to tap into autistic learning style and strength. It seems more clear that the onus will still be on the autistic child to change -- to appear and become less autistic, even if it's all just pretense.

“Too often, we pour the energy needed for recognizing and exploring difference into pretending those differences are insurmountable barriers, or that they do not exist at all. This results in false and treacherous connections. Either way, we do not develop tools for using human difference as a springboard for creative change within our lives. We speak not of human difference, but of human deviance.” (p.p. 115-116)

We must not refuse to see the challenges that autistic individuals face, and I find it surprising that people still think that disability is a bad word, or that accepting autism means we don't educate autistic people. We must begin to re-imagine disability and autism. We spend so much of our energy mourning, eradicating, detecting and in the meantime, our children get locked out of schools, even “special ed” schools, or they can’t go to camps with shadows and become excluded from so many programs and from life in general. Kids also generally get locked into categories -- special ed, normal ed, or gifted ed. But what of Adam who is both gifted and disabled? Believe me, there is no clear cut line when it comes to intelligence and disability. Autistic and other disabled people are not allowed to go to school with aide dogs or devices. They are viewed as a "disruption" to the classroom and are often turned away before even a first meeting. Many parents have called us up at The Autism Acceptance Project, disgruntled and upset with a system that simply excludes the autistic child or that separates them from their siblings. Furthermore, an ABA supported program which removes the child from the classroom is simply another form of institutionalization and segregation. It is also sadly a method which seeks to have a child respond normally, which is a kind of pretense as well, as opposed to enabling autistic response. It will not work to benefit autistic people in the long-run.

The barriers that exist do not lie within the autistic individual, although they do face many challenges. Most of the barriers lie in attitude towards disability. We spend so much money to affirm over and over again that autistic people are less valuable and deviant. Autism Canada has mimicked the Autism Speak’s style commercial to make autism appear like a horrible epidemic. They shamefully have objectified the autistic individual in order to raise money for the questionable research I have mentioned here. Adam and every other autistic individual need not/must not be objectified in order to be viewed as society’s surplus, or an object for research funds. So far, I’ve found little research that has actually shaped the lives of autistic individuals for the better.

Adam is the best. He works hard, he is smart, and he can type now. He is human. He is different AND equal. Once our autism research is developed on that premise of "different and equal" maybe, just maybe, our children will no longer be used for profit as the “surplus members of society,” or media entertainment, but rather, come to be viewed as valuable members of our community and thus, better able to contribute to it.

Well in case you don't know I have been in the thick of it today and yesterday at IMFAR. Not an easy place to be, indeed conferences of this magnitude are not easy places to be.

Anyway this morning I managed to challenge Geraldine Dawson about the whole notion of autism speaks and the ethics of all of this science, the fact that what autism science tends to neglect is that it is about real people and real lives. Naturally this created a bit of a blowback, as I was immediatly characterised as an aspie extremist who cares not and understands less about non verbal autistics, which of course is very far from the case. However it seems to be easier for those who don't like to listen to us, to characterise us and judge us instantly by what we are not.

Anyway I did raise the ethical issue again in another presentation where I was not happy with the fact that a particular experiment involved lumbar puncture, and I raised the issue at the AGM that INSAR should be about promoting ethics in the study of autism along with the science.

Thanks Estee, great writing, as always. In line with whatlaurentius rex is talking about, it is hard for aspies to fight this battle as we are so often invalidated by the high vs. low functioning argument and it is so helpful if a parent herself formulates such meaningful arguments. The money spin-off from autism (whether it is prevention research or therapies preying on parents' hope of a cure)is so huge, I am not suprised that sensible and truthful voices are getting lost. I hope this will change.

Wonderful writing. A long time ago I worked for a Dr. Sturgeon, Medical Officer of Health for Ontario, whose project was to visit all health oranizations in the province to understand their capabilities and opinions. The object being that everyone was off doing their own thing and this all had to be co-ordinated because no one was getting anywhere. How would this fit in to the autism scenario today?

Also, see my post on the type of research being conducted. Preventing autism, or knowing that autistic people don't have the same eye contact sure doesn't assist them in schools, now, does it. I think we understand a lot about autism. The problem is that people do not wish to acknowledge it as a human difference that deserves to be accommodated.

I don't know how this research would help my nonverbal, regressed son,either.

He showed no signs of autism before walking. He made eye contact (well, he still makes good eye contact), was starting to speak (could even say his sister's name in reference to her at a very early age). My guess is that it is his sensory seeking that caused the regression, rather than the autism itself causing the regression. Once he started really walking, that is all he wanted to do. Since all his focus and energy was wrapped up in his stim, he lost his other achievements.

Evaluation based on eye contact is a poor evaluation tool, imho. Tristan would never have been considered "at risk for developing autism" as an infant. And I think now his eye contact isn't always recognized as excellent not because it isn't but because he has that autism diagnosis, rather than because it isn't (the people who work with him daily say it is excellent, others say it is on 'his terms')

Though I can see benefit in 'early intervention'. Not for 'normalizing' but for providing services, helping others understand. I don't know what we'd have done if my son's school system, through the Early On program hadn't put him in preschool at 2.5 yrs old. And I know my family wouldn't be nearly as open to his differences if he hadn't had the label 'autism'. But then his education program has much more positive supports than others.

(sorry if this is duplicate, it bounced me back and didn't say it posted though I like this second post better)